Does anyone else have Gastroparesis not caused by diabetes?

Posted by Darlia @darlia, Nov 9, 2017

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

@pendragonart

a friend has it and doesn’t have diabetes. she is on reglan. she already had depression before starting it. I am trying to help with diet etc.

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Yes i do

@darlia I have gastroparesis caused by chronic pancreatitis and the inability of my pancreas to produce digestive enzymes. I take enzyme replacements, but they only make things a little more tolerable and add in my opiates for pain an d I usually take two different meds for constipation daily and at times that is not enough to keep things moving. Does this help any? Is there any med you take that could b e a contributing factor?

I was just diagnosed with “lazy stomach” as the doctor called it. I refuse to take Reglan tho they all keep pushing me to. Mostly, I just live with it, like most of my other woes. A dietitian told me that lemon or vinegar helps taken before meals but I haven’t really tried that. I sometimes take warm lemon water in the morning but to loosen phlegm.

@nanny23

How did you find that out?

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@nanny23.. greetings! I stand corrected.. my neurologist told me that the Neuropathy I have IS referred to as Autoimmune Peripheral Neuropathy.
Darlia

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@katmandoo

I have idiopathic gastroparesis and am pre diabetic.

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You should get tested for the FGFR3 antibody

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It had been determined that since I have the rare FGFR3 ANTIBODY which is the cause of the Peripheral Neuropathy, it is also the cause of the Gastroparesis since this is caused by the nerves not working properly in the stomach.

@aishia

Hello Darla, Thank you for the feedback. I agree depending on the day what I eat may or may not agree with my stomach. I found it strange they requested another study although the two I had shows my GP to worsen. I use smoothies and tea as well. I have just started using dementia and Black Walnut natural herbs. I am always trying different combinations of things. Sometimes I can due tuna and crackers but once my body seems to become immune to something after while it rejects. Everyday is a challenge, but I refuse to sink so I must keep SWIMMING.

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I have similar reactions to yours. I get allergic to thing the more I use them. Sometimes I can get by eating a certain food and other times that same food can bother me. Most of the "healthy" foods I am told to eat are either worsens one of my other conditions or I am allergic to them. It's so hard to know what to do or what to eat. You're right that there is no giving up so I keep trying.

I tried apple vinegar and it stung in my stomach.

I've had gastroparesis since 2005 and I was able to deal with it until 2 years ago. I don't eat very much to begin with but I kept getting very sick, pneumonia/bronchitis/dehyration etc. My electrolytes kept dropping down so fast causing confusion and making me so sick. Between 2016 & 2017 I was in ER 17 times, with 7 admissions. Gastroparesis reconfirmed again early 2017. I kept telling 2 gastros, my internist, a "specialist" that I paid out of pocket seeking a diagnosis; telling all of them the same thing, I couldn't hold my food down, not even the gastro diet, my stomach hurt all of the time, I was vomiting 4-6X week. That I was trying different foods in small amounts but It didn't matter. I told them I was belching so badly that I couldn't sleep, that I was hiccuping constantly that hurt. The hospital, along with these doctors all ran labs, labs all positive for dehydration and electrolytes. Stopped going to doctors & ER. Sick & tired, literally. Have been bedridden over 2 years. Finally, after 4 months, my husband insisted on taking me to a clinic outside hospital system. The clinic had access to all my records. PA diagnosed me within 15 minutes – severe malnutrition due to gastroparesis. Saw a new Gastroenterologist, tested me, gave me hope but I was unable to take Domperidone. He said I was so sick that he had to send me to Tampa. I'm seeing another Gastroenterologist on March 23 & a surgeon on March 27. I am scared. I am so sick, I have no energy. The pain is unbearable. I am being told I need surgery. Does anyone have any advice to give me? I'm on a liquid diet and drinking Pedialyte but I'm vomiting that presently also. Thank you so much. Donna

@donnamarie

Hello Donna:

How fortunate that you got to a hospital system that was on top of your condition and gave you a diagnosis!

Could you tell us more about the type of surgery the doctor has recommended?

I look forward to hearing from you again.

Teresa

@nanny23

How did you find that out?

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Thanks for the info appreciate it

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@donnamarie

I've had gastroparesis since 2005 and I was able to deal with it until 2 years ago. I don't eat very much to begin with but I kept getting very sick, pneumonia/bronchitis/dehyration etc. My electrolytes kept dropping down so fast causing confusion and making me so sick. Between 2016 & 2017 I was in ER 17 times, with 7 admissions. Gastroparesis reconfirmed again early 2017. I kept telling 2 gastros, my internist, a "specialist" that I paid out of pocket seeking a diagnosis; telling all of them the same thing, I couldn't hold my food down, not even the gastro diet, my stomach hurt all of the time, I was vomiting 4-6X week. That I was trying different foods in small amounts but It didn't matter. I told them I was belching so badly that I couldn't sleep, that I was hiccuping constantly that hurt. The hospital, along with these doctors all ran labs, labs all positive for dehydration and electrolytes. Stopped going to doctors & ER. Sick & tired, literally. Have been bedridden over 2 years. Finally, after 4 months, my husband insisted on taking me to a clinic outside hospital system. The clinic had access to all my records. PA diagnosed me within 15 minutes – severe malnutrition due to gastroparesis. Saw a new Gastroenterologist, tested me, gave me hope but I was unable to take Domperidone. He said I was so sick that he had to send me to Tampa. I'm seeing another Gastroenterologist on March 23 & a surgeon on March 27. I am scared. I am so sick, I have no energy. The pain is unbearable. I am being told I need surgery. Does anyone have any advice to give me? I'm on a liquid diet and drinking Pedialyte but I'm vomiting that presently also. Thank you so much. Donna

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@donnamarie, In all of the testing you have had, I am sure someone has checked for pancreatitis, but I would double check to be sure. There are times when the pancreas becomes so stressed that you don't get the typical extremely high liver enzymes (lipase and amylase) that point to pancreatitis. That also causes gastroparesis because your body is not producing the enzymes needed to digest your food which also leads to malnutrition. I would hope there is an easier to combat explanation, but your symptoms are identical to someone suffering from either acute or chronic pancreatitis.

I'm getting an upper endoscopy April 5 to confirm gastroparesis. I had to cancel my last one a few weeks ago because I tried cleaning out for almost 3 days and nothing was moving. I told my doc when they do the next one next month that I absolutely do not want my esophagus stretched, it's only been stretched once so I'll remind him again before they give me the anesthesia. I was just prescribed amlodipine besylate a low dose calcium channel blocker for my Nutcracker esophagus. I've only been taking it about 5 days but I asked the doctor please prescribe until after I get the upper GI test results. I will look up this other so-called rare antibody. I'm on mostly a liquid diet right now and I'm dropping weight really quick. My blood work is great except I'm low on folic acid and vitamin D. I read about esophagitis eosinophilic people are low on vitamin D, I also have disc desiccation in the thoracic spine and I'm assuming that's one reason for my neuropathy plus the cervical injuries and my low back with bone on bone. Hopefully we can get this figured out soon! I will be 50 years old in August and I still can't work, my hands go numb and I'm having trouble with my feet turning inward, I almost fell while taking a shower last week luckily I grabbed the side of the tub before I hurt myself. Thank you all for responding, I will keep in touch see what my GI doc will do after my test next month!

@donnamarie

I've had gastroparesis since 2005 and I was able to deal with it until 2 years ago. I don't eat very much to begin with but I kept getting very sick, pneumonia/bronchitis/dehyration etc. My electrolytes kept dropping down so fast causing confusion and making me so sick. Between 2016 & 2017 I was in ER 17 times, with 7 admissions. Gastroparesis reconfirmed again early 2017. I kept telling 2 gastros, my internist, a "specialist" that I paid out of pocket seeking a diagnosis; telling all of them the same thing, I couldn't hold my food down, not even the gastro diet, my stomach hurt all of the time, I was vomiting 4-6X week. That I was trying different foods in small amounts but It didn't matter. I told them I was belching so badly that I couldn't sleep, that I was hiccuping constantly that hurt. The hospital, along with these doctors all ran labs, labs all positive for dehydration and electrolytes. Stopped going to doctors & ER. Sick & tired, literally. Have been bedridden over 2 years. Finally, after 4 months, my husband insisted on taking me to a clinic outside hospital system. The clinic had access to all my records. PA diagnosed me within 15 minutes – severe malnutrition due to gastroparesis. Saw a new Gastroenterologist, tested me, gave me hope but I was unable to take Domperidone. He said I was so sick that he had to send me to Tampa. I'm seeing another Gastroenterologist on March 23 & a surgeon on March 27. I am scared. I am so sick, I have no energy. The pain is unbearable. I am being told I need surgery. Does anyone have any advice to give me? I'm on a liquid diet and drinking Pedialyte but I'm vomiting that presently also. Thank you so much. Donna

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Have you had an esophageal manometry yet? You could also have Nutcracker / Jackhammer esophagus like I do. I also have esophagitis eosinophilic, esophagus damage due to food allergies

@donnamarie

I've had gastroparesis since 2005 and I was able to deal with it until 2 years ago. I don't eat very much to begin with but I kept getting very sick, pneumonia/bronchitis/dehyration etc. My electrolytes kept dropping down so fast causing confusion and making me so sick. Between 2016 & 2017 I was in ER 17 times, with 7 admissions. Gastroparesis reconfirmed again early 2017. I kept telling 2 gastros, my internist, a "specialist" that I paid out of pocket seeking a diagnosis; telling all of them the same thing, I couldn't hold my food down, not even the gastro diet, my stomach hurt all of the time, I was vomiting 4-6X week. That I was trying different foods in small amounts but It didn't matter. I told them I was belching so badly that I couldn't sleep, that I was hiccuping constantly that hurt. The hospital, along with these doctors all ran labs, labs all positive for dehydration and electrolytes. Stopped going to doctors & ER. Sick & tired, literally. Have been bedridden over 2 years. Finally, after 4 months, my husband insisted on taking me to a clinic outside hospital system. The clinic had access to all my records. PA diagnosed me within 15 minutes – severe malnutrition due to gastroparesis. Saw a new Gastroenterologist, tested me, gave me hope but I was unable to take Domperidone. He said I was so sick that he had to send me to Tampa. I'm seeing another Gastroenterologist on March 23 & a surgeon on March 27. I am scared. I am so sick, I have no energy. The pain is unbearable. I am being told I need surgery. Does anyone have any advice to give me? I'm on a liquid diet and drinking Pedialyte but I'm vomiting that presently also. Thank you so much. Donna

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@donnamarie ^^^

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